Latest / Tom's Hirschsprung's Podcast / Episode 85 - With Kelly Kronowski

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Episode 85 - With Kelly Kronowski · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode eighty five of
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Speaker 1: Tom's Hirshprung's Podcast. I'm delighted to be joined by Kelly
0:53
Speaker 1: Kronkowski and we are going to talk about all about
0:56
Speaker 1: your son, Kellen and his Hirshbrung's disease. To the podcast.
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Speaker 2: Hi, thanks for having me. Super excited to talk about.
1:04
Speaker 3: Kellen, absolutely, and I thank you so much for coming
1:07
Speaker 3: on now. We've got quite a lot to discuss, quite
1:11
Speaker 3: a lot of interesting parts of Hirshbrungs that we have
1:16
Speaker 3: come across a little bit before. So there's a couple
1:18
Speaker 3: of things in there that me and Kellen will share
1:22
Speaker 3: in terms of our Hirshbrung's journeys that don't necessarily covered
1:27
Speaker 3: by everybody else, But we'll obviously get into that later
1:31
Speaker 3: down the road. But you have quite an interesting diagnosis story,
1:37
Speaker 3: just a lot of software. So would you like to
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Speaker 3: would you like to start there?
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Speaker 2: Yeah? Sure. So. Actually Kellen was diagnosed very late at
1:46
Speaker 2: thirteen months. He was born completely normal labor and delivery.
1:56
Speaker 2: There were signs leading up to the diagnosis over the
1:59
Speaker 2: lock course of the year, but of course I had
2:01
Speaker 2: no idea what Hirshprungs was. So, you know, when we
2:05
Speaker 2: took him to the pediatrician to raise you know, concerns
2:08
Speaker 2: or questions, it was brushed off as, oh, it's just
2:11
Speaker 2: typical infant constipation. When we were in the hospital, I
2:17
Speaker 2: remember the first night, uh he was born, they came in,
2:23
Speaker 2: they woke me up, they woke him up. He was
2:25
Speaker 2: sound asleep to feed, and he wanted nothing to do
2:28
Speaker 2: with breastfeeding, bottle feeding, like he just wanted to sleep.
2:32
Speaker 2: He was not interested in feeding at all. And I
2:36
Speaker 2: remember the nurses actually saying, we just need to get
2:40
Speaker 2: him to eat something. And at that time they were
2:43
Speaker 2: very you know, really wanted me a breastfeed that was
2:47
Speaker 2: like the preferred you know, feeding method. But even at
2:51
Speaker 2: that point they were like, we need to give him
2:53
Speaker 2: a bottle, like we just need him to drink milk
2:56
Speaker 2: like he was not interested. So I just thought, oh,
3:00
Speaker 2: I have a really cute, sleepy baby. How nice, you know.
3:03
Speaker 2: I didn't really it wasn't really a red flag for
3:06
Speaker 2: me at the time. Looking back, I was like, okay,
3:09
Speaker 2: first red flag. First day of birth. He did past maconium.
3:14
Speaker 2: I remember it being a small amount. The doctor was
3:17
Speaker 2: not worried. He said it was fine, it was normal,
3:20
Speaker 2: and then we can't. We brought him home from the
3:22
Speaker 2: hospital and I remember that first day he only drank
3:27
Speaker 2: thirty five mls of formula the entire day, which is
3:32
Speaker 2: hardly anything. And I called the doctor in tears because
3:36
Speaker 2: I knew as like a mom, and he's my second
3:38
Speaker 2: born and I have an older daughter, so I knew
3:41
Speaker 2: that like that was not normal. And I called the
3:44
Speaker 2: doctor and I was just I was in tears, and
3:47
Speaker 2: I said, he is not drinking. He will not feed.
3:51
Speaker 2: Something is wrong. And the doctor kind of was like, okay, well,
3:55
Speaker 2: he might just be drinking just enough to, you know,
3:59
Speaker 2: maintain his Let's bring him in in like two days
4:03
Speaker 2: for a way check. We'll see if he's maintaining his weight.
4:07
Speaker 2: And so we brought him in and he was pretty
4:10
Speaker 2: much maintaining his weight. He you know, the doctor didn't
4:14
Speaker 2: seem like there was a concern. And then over the
4:19
Speaker 2: course of that next year, I feel like we fell
4:22
Speaker 2: into very similar patterns of you know, being very slow
4:28
Speaker 2: to feed, not finishing bottles. I feel like he could
4:32
Speaker 2: drink one bottle for like two hours, you know sometimes.
4:38
Speaker 2: And then he started not passing stool. So we took him,
4:44
Speaker 2: you know, back to the PEDIATRICI we raised that concern
4:48
Speaker 2: and he just felt like he was constipated. So he
4:52
Speaker 2: said to give him glisser and suppositories. So we would
4:57
Speaker 2: give him the glistener and suppository and he would pastool
5:01
Speaker 2: and that the doctor seemed to think that was okay.
5:06
Speaker 2: That that's how he went to the bathroom. And since
5:10
Speaker 2: we really trusted our pediatrician, we never had concerns before.
5:14
Speaker 2: He was great with our daughter. We just trusted that, Okay,
5:20
Speaker 2: there's nothing to be worried about. He he was, you know,
5:24
Speaker 2: he never said he wasn't meeting milestones. He wasn't you know,
5:28
Speaker 2: he was on his curve for growth. But then as
5:32
Speaker 2: he started to get a little bit older in like
5:35
Speaker 2: you know, you know, six seven, eight months, we we
5:38
Speaker 2: did notice that like his belly sometimes would be a
5:41
Speaker 2: little distended, kind of like a little you know, pooch
5:45
Speaker 2: sticking out, and you know, the doctor never said said
5:50
Speaker 2: anything of concern. And then then we would notice too
5:56
Speaker 2: that he'd be very gassy. He had he would have
5:59
Speaker 2: like horrific thick gas, and you know, it never really
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Speaker 2: like clipped that, okay, like maybe there's something more going
6:09
Speaker 2: on here. We just thought, like he's gassy, like he
6:12
Speaker 2: maybe you know, he's We know that he struggles with constantipation,
6:17
Speaker 2: but you know, other than that, he was always a
6:20
Speaker 2: happy baby, smiling. I do know, and looking back that
6:25
Speaker 2: sleeping at night was not very good for him. He
6:28
Speaker 2: was not. He was up a lot fussy at night,
6:33
Speaker 2: and so I wonder looking back if there was like
6:36
Speaker 2: some you know, discomfort going on. There probably was things,
6:40
Speaker 2: but overall, generally speaking, happy baby, meeting milestones, you know,
6:45
Speaker 2: doing all the things that babies do. And then one
6:50
Speaker 2: weekend he was thirteen months, it was exactly one month
6:54
Speaker 2: after his first birthday, we went out to Lancaster, Pennsylvania
6:59
Speaker 2: for a weekend away. We were at the Turkey Hill
7:04
Speaker 2: Creamery waiting to go in and you know, make some
7:08
Speaker 2: ice cream, and I had given Kellen. I think it
7:12
Speaker 2: was like the cereal bar type thing, and he had
7:15
Speaker 2: a little bite and he's had them before. And then
7:17
Speaker 2: all of a sudden, he just threw up everywhere, and
7:21
Speaker 2: we were like, oh, maybe he like gagged on it,
7:25
Speaker 2: like you know, it just you know, we just thought
7:27
Speaker 2: he's a baby. Baby's spit up, they throw up, you know.
7:31
Speaker 2: So after that he seemed to be better. But then
7:36
Speaker 2: as the weekend went on, he started to be very
7:41
Speaker 2: like fatigued, and then we noticed the next day he
7:47
Speaker 2: had a little bit of a fever. So we're like,
7:50
Speaker 2: he must be either getting a virus or he's teething,
7:53
Speaker 2: but like we should cut the trip shore and come home.
7:56
Speaker 2: It's only about a three hour drive for us. So
7:59
Speaker 2: we drove home that night. You could tell he wasn't
8:01
Speaker 2: feeling good, so I woke so I put him to bed.
8:08
Speaker 2: The next morning, he woke up and I knew immediately
8:12
Speaker 2: something was very wrong. He was extremely, extremely lethargic, and
8:23
Speaker 2: he would not take a bottle. He was just like
8:25
Speaker 2: clinging to me, and I called the doctor and I
8:29
Speaker 2: actually I remember using that word. I was like, he's
8:32
Speaker 2: very lethargic right now. And I remember the nerve the
8:36
Speaker 2: receptionist at the doctor's office telling me what the definition
8:40
Speaker 2: of lethargic meant, Like I like, I was exaggerating like
8:46
Speaker 2: his symptoms and I and even I remember calling my
8:51
Speaker 2: mother and my sister and saying, something is wrong with Kellen,
8:54
Speaker 2: like I was just hysterical, and they like, we'll take
8:57
Speaker 2: him to the emergency room. And I was like, well,
8:59
Speaker 2: I have an appointment for the like early this afternoon.
9:02
Speaker 2: Let me see what the pediatrician says. Because I thought
9:05
Speaker 2: maybe I'm you know, maybe I am. It isn't as
9:09
Speaker 2: serious as I just had this gut feeling that something
9:11
Speaker 2: was wrong. And my mother in law she's like, let
9:16
Speaker 2: me she's she came over and she saw that he
9:20
Speaker 2: was not doing well and was like, let me come
9:22
Speaker 2: with you to the doctor. So we go to the
9:24
Speaker 2: doctor and he's just laying there. He's like really just
9:30
Speaker 2: out of it. And a doctor again was like, he
9:33
Speaker 2: must have a virus, and with the constipation, you know,
9:37
Speaker 2: he might he might be feeling, you know, he might
9:40
Speaker 2: be constipated and then also have a touch of a virus.
9:44
Speaker 2: So let's give him your relax in his favorite drink.
9:47
Speaker 2: And I'm thinking he doesn't really have a favorite drink
9:51
Speaker 2: he's won, and he's also not drinking. So how am
9:55
Speaker 2: I going to give this one year old near relax
9:58
Speaker 2: in his bottle when he not drinking. And and so
10:02
Speaker 2: we came home and we bought the mir Relax and
10:04
Speaker 2: we're trying to give him a bottle, trying to get
10:07
Speaker 2: him to drink something. And I remember it was about
10:11
Speaker 2: five or six o'clock at night and my husband walked
10:14
Speaker 2: down the steps and he looked at me and was like,
10:16
Speaker 2: I think we need to take him to the emergency room.
10:19
Speaker 2: And like that's all I needed, was like someone else
10:22
Speaker 2: like to say to me, let's go to the emergency room.
10:25
Speaker 2: And I was like, oh, yes, let's go. Like I
10:28
Speaker 2: I was like, we need to go right this minute.
10:29
Speaker 2: So we had an emergency room, and I remember in
10:32
Speaker 2: the emergency room, he threw up again in the emergency room,
10:36
Speaker 2: and they checked us in and they started doing some tasks,
10:43
Speaker 2: and they actually found that he had so much stool
10:49
Speaker 2: that it was pressing on his kidneys and he was
10:53
Speaker 2: by the morning was not even able to urinate on
10:55
Speaker 2: his own anymore. But thank god, we like I had
11:00
Speaker 2: nurses like tell me that if we didn't bring him
11:03
Speaker 2: like that night that they don't think he would have
11:07
Speaker 2: been alive in the morning. Like that's how quickly things
11:12
Speaker 2: went from something's wrong to like, this is a life
11:16
Speaker 2: or death situation. So we were immediately obviously admitted to admitted,
11:21
Speaker 2: and then the next day moved to the ICU. He
11:24
Speaker 2: spent eleven days in the ICU, but it was very quickly.
11:28
Speaker 2: I think it was that first day that the ICU
11:32
Speaker 2: doctor and the pediatric surgeon came in and spoke with us,
11:36
Speaker 2: and they used the word Hirshparks disease, like pretty early.
11:41
Speaker 2: They were like, we were suspecting that this is a
11:43
Speaker 2: case of Hirschwarks disease. So I was actually surprised about
11:46
Speaker 2: that because you know, being that it is, you know,
11:50
Speaker 2: not really talked about or you know, everybody thinks that
11:53
Speaker 2: it's so rare that they they actually brought it up
11:58
Speaker 2: pretty pretty quick. So he was in the ICU. First,
12:05
Speaker 2: they did bring him down, they put him under anesthesia.
12:10
Speaker 2: They were doing like bedside like wash outs. They put
12:13
Speaker 2: him under anesthesia to try and do the biopsy, but
12:16
Speaker 2: he was just so too sick and it they couldn't
12:20
Speaker 2: do it at the time. Then his like he was
12:23
Speaker 2: just getting sicker. So they did an emergency clastomy at
12:27
Speaker 2: that time and we were discharged after ten days, and
12:32
Speaker 2: then maybe that was October, and then January we had
12:36
Speaker 2: the full thickness biopscene when he was a little bit healthier,
12:39
Speaker 2: and then that's when they like officially confirmed Perishbrug's disease.
12:42
Speaker 2: But they pretty much said that's what it was while
12:46
Speaker 2: we were in the hospital. So that's what led to
12:49
Speaker 2: our very late diagnosists.
12:51
Speaker 3: Wow, that is yet, why's some thirteen month journey and
12:57
Speaker 3: exactly thirteen months as well?
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Speaker 2: Exactly thirteen months. Yes, yes, we actually went to the
13:02
Speaker 2: hospital on October first, and he was born in September first,
13:05
Speaker 2: so it was like literally to the day here. Yeah.
13:11
Speaker 3: Yeah, just a couple of points that you made there
13:13
Speaker 3: to pick up on. One thing I will always advocate
13:16
Speaker 3: on ever since starting this eighteen months ago is mother's intuition.
13:22
Speaker 3: And I mean, you know from my own story, you know,
13:26
Speaker 3: if it had not been for my mum's intuition, the
13:28
Speaker 3: things would have been a lot worse for me. So
13:31
Speaker 3: I would always advocate and that there's always and I
13:36
Speaker 3: I asked people about this a lot about how do
13:40
Speaker 3: they explain mother's intuition. And I guess I'll ask you
13:45
Speaker 3: the same question, because I guess it's just a feeling.
13:48
Speaker 3: Is not necessarily anything you can put your finger on,
13:52
Speaker 3: is that right?
13:53
Speaker 2: Yeah? Yeah, I just woke up that morning and just
13:57
Speaker 2: knew that something was wrong. And I think there's this
14:02
Speaker 2: like battle, right that you you don't want there to
14:07
Speaker 2: be something wrong, right, but you kind of know that
14:10
Speaker 2: there is. So it's almost like you're like, at least
14:13
Speaker 2: for me in that moment, I was almost trying to
14:16
Speaker 2: like push those feelings down a little bit because I'm
14:18
Speaker 2: trying to convince myself like, Okay, maybe he's just teething,
14:22
Speaker 2: it's just a virus, Like he's just sick, you know.
14:25
Speaker 2: And but there is just this deep gut feeling that
14:32
Speaker 2: you just know, right, you just know that there is
14:34
Speaker 2: something wrong. So yeah, yeah, I can't I can't really
14:38
Speaker 2: put my finger on it. I just knew. I just
14:40
Speaker 2: knew that that there was there was more going on.
14:44
Speaker 3: Yeah, And he said as well, that you'd been back
14:47
Speaker 3: and forth to emergency rooms, to appointments to go and
14:52
Speaker 3: see pediatricians and adoptors and apart from it, So the
14:57
Speaker 3: very end of the diagnosis. Nobody had mentioned the word
15:01
Speaker 3: hirshprungs to you, like at all. Did they say once
15:07
Speaker 3: they had figured out that it was hirshprungs and that
15:10
Speaker 3: they had mentioned that to you, was there kind of
15:13
Speaker 3: an acknowledgment that they got something wrong or an apology
15:17
Speaker 3: or was it just kind of no.
15:20
Speaker 2: The pediatrician they it's funny. They very quickly started to
15:30
Speaker 2: kind of back paddle a little bit. And actually I
15:34
Speaker 2: heard the doctor was like, wow, he wasn't this sick yesterday?
15:39
Speaker 2: Or wow, it's how quickly like that turned around, Like
15:45
Speaker 2: he just was very almost like even when I because
15:50
Speaker 2: the doctor that we had seen that day and that
15:52
Speaker 2: came to the hospital and said that he was not
15:56
Speaker 2: our our normal doctor that we'd see in the practice,
15:59
Speaker 2: he was. And so I actually called our regular doctor
16:03
Speaker 2: and I said, oh, you know, they're they're telling me
16:05
Speaker 2: they wanted me to give permission to move him to
16:07
Speaker 2: the ICU unit, like and at that time I wasn't
16:11
Speaker 2: sure what was going on. I was like, is it
16:13
Speaker 2: that serious that he needs to go to the ICU?
16:16
Speaker 2: I just want to get your thoughts on what's happening.
16:19
Speaker 2: And and he even downplayed that like Oh, well, I
16:23
Speaker 2: think they just want to make sure that he's okay.
16:26
Speaker 2: I think it's more precautionary and and in my head,
16:30
Speaker 2: I'm thinking, you don't put a baby in a pediatric
16:33
Speaker 2: ICU if it's not that serious. So I really do
16:38
Speaker 2: think they were still still like downplaying. Actually it got
16:42
Speaker 2: to the point where I just asked the hospital, I said,
16:44
Speaker 2: I don't want to see the doctors anymore. I switched
16:48
Speaker 2: pediatric pediatricians after that, and I just asked them not
16:53
Speaker 2: to come back because it was it was god very upsetting,
16:57
Speaker 2: and I knew that they kind of missed this. They
17:02
Speaker 2: they missed it right. They didn't even explore that there
17:06
Speaker 2: could be something else going on here. They didn't send
17:10
Speaker 2: us to a gastroine trilogist or any kind of specialist.
17:15
Speaker 2: They just said, oh, it's infinite constipation. It's okay that
17:18
Speaker 2: he's using a suppository to go to the bathroom. And
17:22
Speaker 2: that was that. And I guess because he was, you know,
17:26
Speaker 2: holding his own as far as his health, he it
17:32
Speaker 2: just it just got dismissed. And what's actually very funny
17:37
Speaker 2: is when he was four months old, and I say
17:40
Speaker 2: funny as an ironic, when he was old, he went
17:46
Speaker 2: he went to the hospital because he had the flu
17:50
Speaker 2: and I was concerned about dehydration. And when we took
17:55
Speaker 2: him to the hospital, he had a chest x ray.
17:58
Speaker 2: And when they pulled up his records when he was
18:01
Speaker 2: in the ICU for the hirshbrungs, the pediatric surgeon was
18:08
Speaker 2: actually pulled up those x old x rays and would
18:12
Speaker 2: you know that they could see the hirshbru Like they
18:14
Speaker 2: could see that he had mega colon on that X ray. Wow, Oh,
18:21
Speaker 2: he could have been diagnosed at four months.
18:24
Speaker 3: Yeah.
18:24
Speaker 2: And then because they weren't looking, they weren't looking at
18:27
Speaker 2: the colon. They were looking at the chest right because
18:29
Speaker 2: he had the flu. And it wasn't until they ran
18:32
Speaker 2: back and was really like looking at the full picture
18:35
Speaker 2: that they could actually see that he he had he
18:40
Speaker 2: had mega colon, you know, Like so yeah it that
18:46
Speaker 2: When they told me that, I was like, what you know,
18:50
Speaker 2: because you know it was going on since birth. That's
18:53
Speaker 2: why he wasn't feed. And that's when all the dots
18:55
Speaker 2: started clicking for me and I was like, oh, so
18:57
Speaker 2: that's why he wasn't feeding when he was first born,
19:00
Speaker 2: and that's why he can't go to the bathroom without
19:03
Speaker 2: the suppository, and and that's why he's very gassy, you know,
19:07
Speaker 2: Like I I didn't know, and I think there's like,
19:11
Speaker 2: obviously there's some I feel like there's guilt there, of course,
19:14
Speaker 2: because I'm like, maybe I should have pushed harder, maybe
19:17
Speaker 2: I should have known, right, But how could I have known?
19:19
Speaker 2: I didn't know what Hirshbrunks was. They don't say, they
19:22
Speaker 2: don't they don't explain, Oh, we're so concerned if your
19:25
Speaker 2: baby passes maconium because we're looking for Hirschbrunk's disease. Right,
19:29
Speaker 2: they don't say that.
19:31
Speaker 3: No, No, I mean there's absolutely no way, especially I
19:37
Speaker 3: mean especially I presume as well there's no Hirshprungs in
19:40
Speaker 3: the family or whatnot, so that there would be no
19:44
Speaker 3: way that you would ever suspect this very rare, one
19:51
Speaker 3: in one thousand odds conditions that nobody's ever heard of.
19:57
Speaker 3: Not really, I mean, there's absol polutely no way that
20:02
Speaker 3: that would fall at your door at all.
20:05
Speaker 2: Yeah, right, right, not at all? Yeah. Yeah, I just
20:11
Speaker 2: can't believe, like he went thirteen months right without without
20:16
Speaker 2: us knowing. That's a long time.
20:19
Speaker 3: Yeah, I know, we were talking a little bit off
20:21
Speaker 3: beforehand and thirteen months, I mean we're talking Hirshbrum's diagnosis
20:29
Speaker 3: generally forty eight hours around around that type sort of
20:35
Speaker 3: forty eight hours or so to seventy two hours general diagnosis.
20:40
Speaker 3: Oh yeah, and then that's sort of the usual I
20:45
Speaker 3: guess would probably be all to all metrics to then
20:49
Speaker 3: be you know, not even like a week or three
20:52
Speaker 3: weeks or a month, thirteen months. I just can't imagine
20:56
Speaker 3: as well, the young allness the call must have had.
21:01
Speaker 2: He must have for sure, Yes, yeah, yeah.
21:05
Speaker 3: That does fall, you know, unfortunately on the pediatricians and
21:09
Speaker 3: the doctors who just completely and utterly missed it. And
21:13
Speaker 3: I understand that there's a lot of conditions and then
21:16
Speaker 3: there's a lot of there's a lot of things that
21:19
Speaker 3: could that you know, not feeding is such a wide
21:23
Speaker 3: variety of things that it could be right, but the
21:27
Speaker 3: other symptoms that he was presenting that you told me,
21:30
Speaker 3: I mean, everything kind of points towards Hirshprung's And on
21:36
Speaker 3: that point as well, Yeah, you said that you you
21:39
Speaker 3: kind of once it had the diagnosis, that you linked
21:41
Speaker 3: all the dots together. Was that a sense of relief
21:45
Speaker 3: for you to go actually all of these things that
21:48
Speaker 3: were making sense now makes sense.
21:51
Speaker 2: Yeah, I mean yes, for sure. I think there was
21:54
Speaker 2: a lot of emotions obviously, but it did it did
21:59
Speaker 2: give I think relief, Like you said that, Okay, this
22:05
Speaker 2: all makes sense now. It's like it's like putting the
22:08
Speaker 2: puzzle altogether finally, you know. But then also there's there
22:15
Speaker 2: I would definitely was angry. I was frustrated. I was
22:20
Speaker 2: I mean, I had a lot of emotions. But knowing that, okay,
22:27
Speaker 2: that's why all this was happening, it almost I don't
22:31
Speaker 2: want to say it gave closure because obviously once we
22:34
Speaker 2: had the diagnosis, then that just opened a whole other world.
22:41
Speaker 2: But it was like unlocking the keys to the hirshn
22:45
Speaker 2: world after that, you know, which is a other world
22:49
Speaker 2: because I think even when we were in the hospital
22:52
Speaker 2: and had the diagnosis, obviously we were just at a
22:56
Speaker 2: local hospital, so they don't really see a lot of
22:59
Speaker 2: Hirshrunks disease, and they kind of led us to believe
23:04
Speaker 2: that he would have he would have the class tomy
23:07
Speaker 2: his you know, let his intestine heel a bit, let
23:11
Speaker 2: us callin heel, and then we would have the pull
23:15
Speaker 2: through procedure, and then he would be as good as new, right,
23:19
Speaker 2: it'd be all be fixed, and I probably learned that
23:23
Speaker 2: that is just not what happens.
23:28
Speaker 3: Not no, no, not quite not really, it's really great
23:34
Speaker 3: if it did. In fairness, though, there are a lot
23:37
Speaker 3: of people that do talk to that they have the
23:39
Speaker 3: pull through and then you know, everything's everything's kind of
23:44
Speaker 3: you know fine in inverted coors. But yeah, they don't really.
23:48
Speaker 3: But is it such a wide variety condition as well
23:54
Speaker 3: that everybody's everybody's different, I guess different.
23:57
Speaker 2: Yeah, yeah, well we fell into the not the not
24:03
Speaker 2: being okay after the pull through. I mean, obviously, I
24:06
Speaker 2: think from a health perspective, right, like after the pull through,
24:12
Speaker 2: that definitely saved his saved his life. I mean the
24:15
Speaker 2: colostomy really, I think saved his life. And he was
24:19
Speaker 2: such a different kid after that. He started eating more
24:23
Speaker 2: and it's just amazing to me, Like you said, how
24:26
Speaker 2: much discomfort he must have experienced in that first thirteen months.
24:31
Speaker 2: I think it just speaks like so much about like
24:33
Speaker 2: what type of kid I have, because he was always
24:37
Speaker 2: happy and he's so resilient and even now he's resilient,
24:42
Speaker 2: and so I think like that just really speaks volumes
24:45
Speaker 2: about about how he is, Like, you would never know
24:48
Speaker 2: from his demeanor that he was suffering or uncomfortable or
24:54
Speaker 2: you know, having this this really major condition and there
25:00
Speaker 2: was no signs from from him other than not being
25:04
Speaker 2: the best sleep.
25:04
Speaker 3: Right, Like yeah, yeah, and word resilience, I hear it
25:09
Speaker 3: awful lot, And you're absolutely right because I think as
25:12
Speaker 3: Hirschbrung's kiars, we do go through a lot of surgeries
25:16
Speaker 3: when we're younger, we do go through a lot of
25:17
Speaker 3: pain because you just can't blint. It's it's not not
25:21
Speaker 3: anyone's fault. You just the surgeries are going to be
25:23
Speaker 3: painful and you can't you can't avoid that. But what
25:26
Speaker 3: it does is it gives you an enormous pain resilience.
25:31
Speaker 3: I've seen with myself and with a lot of people
25:34
Speaker 3: that it does then take take us a lot or
25:38
Speaker 3: take a lot for us to be in any kind
25:42
Speaker 3: of pain because we've just been through so much that
25:45
Speaker 3: are I don't know the nerve thing or whether it's
25:48
Speaker 3: a pain receptors thing, but yeah, we don't. We don't
25:51
Speaker 3: feel pain as much as everyone else does. I don't
25:55
Speaker 3: Tellen has that as well.
25:57
Speaker 2: Yeah, I mean yeah, I would say, yeah, I don't
26:01
Speaker 2: know if it's that or if it's he's just sometimes
26:04
Speaker 2: I think scared to admit when he's not feeling well
26:07
Speaker 2: or like if he is in pain because he doesn't
26:11
Speaker 2: want to have to like go to the doctor, go
26:13
Speaker 2: to the hospital, or take medicine. So I don't know
26:16
Speaker 2: if it's an avoidance thing, but he it's very you know,
26:20
Speaker 2: if he's complaining about something and something's really wrong, because
26:24
Speaker 2: he does not complain. He doesn't complain when he has
26:27
Speaker 2: an earache or throw hurting or just you know, normal
26:31
Speaker 2: kid things. He just he just doesn't plain about it.
26:37
Speaker 3: Wow, that's that. That takes a lot as well. That
26:40
Speaker 3: does take a lot to be in pain and just
26:43
Speaker 3: kind of go, oh, well, I'll get on with it.
26:45
Speaker 3: But I think we we do a lot. And again
26:50
Speaker 3: I'm not saying Hirshprung's is the only condition that has
26:53
Speaker 3: this is probably quite a few conditions, but I think
26:57
Speaker 3: we do go through, especially a lot of sort of
27:00
Speaker 3: stomach related pain, and some people have pain that's just
27:04
Speaker 3: kind of a dull like and it's always there, and
27:06
Speaker 3: some people have no pain at all. But I think
27:08
Speaker 3: we just kind of get on things.
27:09
Speaker 2: I guess, yeah, yeah, I feel like that's definitely how
27:14
Speaker 2: he is.
27:17
Speaker 3: I know you said as well about different treatments and
27:22
Speaker 3: the fact can and gone to a different pediatrician and
27:28
Speaker 3: do different places. I know you want to talk a
27:31
Speaker 3: little bit about sort of your journey in Kellen's journey
27:36
Speaker 3: in finding finding treatment. What else did you want to
27:42
Speaker 3: sort of add onto that?
27:45
Speaker 2: Well, you know, I think after we had the initial
27:49
Speaker 2: diagnosis and then the pull through procedure, like I said,
27:52
Speaker 2: those were at local hospitals. Once that was over and
27:55
Speaker 2: we realized like this is going to be ongoing, that
28:00
Speaker 2: he's not gonna just be magically fixed, uh, we decided
28:05
Speaker 2: to look into more specialized hospitals and doctors. Kellen really
28:12
Speaker 2: struggled after the pull through with the dreaded rash. It
28:17
Speaker 2: was very brutal. He also was stooling quite frequently. I
28:26
Speaker 2: describe it as almost like somebody squeezing a toothpaste tube,
28:30
Speaker 2: Like it was just constantly kind of like leaking. So
28:33
Speaker 2: between that and the rash, and it was pretty I
28:38
Speaker 2: would say that that first year after the pull through
28:41
Speaker 2: was was hard on everyone. He was in a lot
28:45
Speaker 2: of peyton and and he would he would cry a lot.
28:49
Speaker 2: He was very reserved, very shy, very clingy after that,
28:56
Speaker 2: and so we started going to a specialized doctor at
29:03
Speaker 2: Chopp in Philadelphia Children's Hospital, and that's when he first
29:08
Speaker 2: brought up possibly having Kellen get an alone a MAS done.
29:18
Speaker 2: And I think we were uncertain at first, you know,
29:27
Speaker 2: we just felt like is that too extreme? Does he
29:29
Speaker 2: really need it? Like we kind of explored at one
29:34
Speaker 2: point some medications which he didn't really tolerate very well.
29:40
Speaker 2: And then actually from there we decided to take him
29:45
Speaker 2: to Washington to Children's National Uh to see doctor Levitt.
29:50
Speaker 2: I think the like just as I've been in kind
29:53
Speaker 2: of the Hirsh Prince community and exploring on like different
29:56
Speaker 2: Facebook pages. Obviously, doctor Levitt comes up very greatly for
30:00
Speaker 2: a good reason. So we just felt like it made
30:04
Speaker 2: sense to take him there. It's it's about a three
30:07
Speaker 2: and a half hour drive for us, and we just
30:11
Speaker 2: wanted that like second opinion, to know, like what are
30:15
Speaker 2: the next steps for him, What is going to give
30:17
Speaker 2: him the best quality of life, what is going to
30:20
Speaker 2: help with At that point, he was still because we
30:23
Speaker 2: just started going there about two years ago, two and
30:25
Speaker 2: a half years ago, so Kellen will be eight, so
30:28
Speaker 2: he was starting he was in kindergarten and he was
30:31
Speaker 2: still wearing diapers because he was just stooling very frequently
30:35
Speaker 2: all the time, no rhyme or reason, and we really
30:39
Speaker 2: didn't know what the cause was of that. The our
30:43
Speaker 2: doctor at chop kind of felt like it was how
30:48
Speaker 2: his pull through was done. He didn't think he would
30:52
Speaker 2: ever gain kind of continence. But then when we went
30:56
Speaker 2: to see doctor Levitt, he did some like testing and
31:01
Speaker 2: he he said that actually his stooling was because of
31:06
Speaker 2: constipation still, so he was still experiencing that it had
31:11
Speaker 2: nothing to do with his surgery or muscle control, like
31:14
Speaker 2: his muscle control and nerves are very much intact. And
31:19
Speaker 2: he just felt that because he was older, that him
31:24
Speaker 2: getting a malone will kind of help establish like a
31:28
Speaker 2: bathroom routine and habit and get him used to being
31:32
Speaker 2: clean and sitting on the potty and kind of help
31:36
Speaker 2: his muscles, like get that muscle memory of like you know,
31:39
Speaker 2: relaxing and tightening and doing what it's supposed to do,
31:44
Speaker 2: and that eventually he'll be able to manage any constipation.
31:48
Speaker 2: Moving forward with with medications, and I just said that
31:53
Speaker 2: Kellen's very reluctant about medications, so we knew that as
31:57
Speaker 2: a at that time six year old. Getting him to
32:00
Speaker 2: manage it with medication was not really going to be
32:04
Speaker 2: like an easy and I don't want to say easy option,
32:06
Speaker 2: but a better option that having a mace for him
32:10
Speaker 2: to kind of establish normal I don't want to say normal,
32:14
Speaker 2: but regular bathroom habits would just be a better choice
32:20
Speaker 2: for him. So that we ended up getting a mace
32:25
Speaker 2: put in two years. It'll be two years. It actually
32:28
Speaker 2: just passed fourth of July weekend, so he's had that since.
32:33
Speaker 3: Fantastic And I think there are increasingly a large amount
32:39
Speaker 3: of people that I talked to who are either going
32:43
Speaker 3: to or thinking about having the mace or it'll have
32:47
Speaker 3: the mace and want to share their experiences on it.
32:53
Speaker 3: And for Kellen, I think the people who would be
32:58
Speaker 3: very interested to listen to the part of yeah, of
33:02
Speaker 3: our discussion and would like to know really sort of
33:07
Speaker 3: how to two years down the line, how is Kelen
33:11
Speaker 3: finding the mace? Uh?
33:12
Speaker 2: Yeah?
33:13
Speaker 3: And what does he feel about it?
33:16
Speaker 2: Yeah? He he loves it actually up until I would
33:24
Speaker 2: say he loved it for certain reasons at first and
33:27
Speaker 2: hated it for some reasons at first at first. We
33:32
Speaker 2: decided so you know, there's two options. Right with the mace,
33:36
Speaker 2: you can either self cathorize, where you insert the catheter
33:41
Speaker 2: into the little stoma in your belly button. His is
33:45
Speaker 2: in his belly bet I know some are not placed
33:48
Speaker 2: in the belly button, but typically I think they are,
33:52
Speaker 2: but that's where his is. And so we would self
33:56
Speaker 2: cathorize in the belly button. And then and the other
34:01
Speaker 2: option is to have a device inserted into the belly
34:04
Speaker 2: button permanently. Not permanently, but you know, it doesn't come out,
34:07
Speaker 2: It stays in there, you know, during the day, a
34:10
Speaker 2: Mickey button or a mini ace. At first, we had
34:14
Speaker 2: the mini ace, but it fell out after like two weeks,
34:17
Speaker 2: and being that we're like three and a half hours
34:19
Speaker 2: away from the hospital, where like we cannot have this
34:22
Speaker 2: falling out and then you know, scrambling to get to
34:25
Speaker 2: Washington to have it fixed or and Kellen would freak out.
34:28
Speaker 2: So that's when we started using a catheter because I
34:32
Speaker 2: was like, oh, this is actually pretty easy to do.
34:35
Speaker 2: But the problem was that Kellen got some like granni
34:38
Speaker 2: aloma tissue forming and Catherine started to become a little
34:45
Speaker 2: bit more difficult. It was kind of resisting, and he
34:50
Speaker 2: was getting very upset about it. So he did not
34:53
Speaker 2: like that part. He did love the part about the
34:56
Speaker 2: ace where he could wear under were and not be
35:01
Speaker 2: in a diaper and not be different than his kids,
35:03
Speaker 2: you know, his classmates, and not constantly like need to
35:07
Speaker 2: get changed, and that he could go to the potty
35:11
Speaker 2: and it would keep him clean. And so he loves
35:14
Speaker 2: that part about the ace and he actually really understands
35:20
Speaker 2: that part, I think, being like a little bit older.
35:24
Speaker 2: The part he hated was when the catheter was challenging
35:28
Speaker 2: to get in he would He did not like that part.
35:32
Speaker 2: So we actually a few months ago had a revision surgery.
35:36
Speaker 2: They cleaned up the granula on the tissue and kind
35:38
Speaker 2: of enlargened his his opening so that hopefully it would
35:46
Speaker 2: heal a little bit better and that he could use
35:49
Speaker 2: the catheter if he chose in the short term. They
35:53
Speaker 2: did put in a Mickey button, which we've had zero
35:56
Speaker 2: problems with it much more stabled in the mini as
36:02
Speaker 2: it has not fallen out since we've had it inserted.
36:07
Speaker 2: And he actually really I was nervous because obviously that
36:11
Speaker 2: is something that you can visibly see, whereas like realistically
36:17
Speaker 2: and hopefully the catheter option you could just have your
36:20
Speaker 2: belly button and you can't really notice that there's anything there,
36:26
Speaker 2: and you know, but he doesn't care. He loves it.
36:30
Speaker 2: He doesn't mind it. I was telling you earlier. He
36:33
Speaker 2: goes swimming without a swim shirt around other kids. It
36:37
Speaker 2: doesn't even dawn on him. He just thinks it's he
36:42
Speaker 2: It doesn't face him. And I will have to say
36:44
Speaker 2: I was concerned that like other kids would ask, well,
36:46
Speaker 2: what's that, they didn't even notice. They didn't even notice
36:50
Speaker 2: that he had some spilly when they could care, and
36:52
Speaker 2: if they did, they didn't say anything. So he really
36:56
Speaker 2: loves it. It's really given him a sense of independence.
36:59
Speaker 2: He's getting to the age he'll be eight in September,
37:01
Speaker 2: so he can do a lot of it himself, which
37:05
Speaker 2: I think he can do more with the mickey button
37:08
Speaker 2: than he did he could do when we had to
37:10
Speaker 2: cap him. So he does a lot of that himself,
37:14
Speaker 2: connecting it, disconnecting it, doing a patency flush. He can
37:19
Speaker 2: do all of that by himself now and I think
37:22
Speaker 2: it just gives him that independence. Of course, like are
37:26
Speaker 2: their challenges, Yeah, because he has to sit on the
37:28
Speaker 2: potty for like forty minutes a day. Usually it's about
37:32
Speaker 2: and sometimes we're tired, or we're busy playing, or we
37:37
Speaker 2: don't feel like doing it. But more often than not,
37:42
Speaker 2: he knows that's a part of his routine. That's going
37:44
Speaker 2: to give him freedom the next day to not worry
37:46
Speaker 2: about having accidents and be a normal kid, and off
37:49
Speaker 2: he goes, doing what all little boys do. So I
37:54
Speaker 2: really think that was the best decision for our family.
37:57
Speaker 2: I don't know what the future will hold, Like I'm
38:00
Speaker 2: hoping that as he gets older, maybe he won't need it.
38:04
Speaker 2: We're hoping that once he gets more comfortable with the
38:07
Speaker 2: thought of taking medication to kind of, you know, help
38:11
Speaker 2: with any constipation that he may have, that he'll be
38:14
Speaker 2: in a good place and be okay to do that.
38:17
Speaker 2: But you know, we'll keep the mace intact for a
38:20
Speaker 2: while or for as long as he wants it or
38:23
Speaker 2: needs it, and and just take it as it comes,
38:26
Speaker 2: because that's all you can do with this.
38:28
Speaker 3: Absolutely. And I think as well, when people talk about
38:33
Speaker 3: Stomas potentially they see and when they see Stonas on
38:38
Speaker 3: Instagram and what have you, they think about like huge,
38:41
Speaker 3: great protruding owners. But the age isn't like that, is it.
38:46
Speaker 2: No, it's tiny. You can't even it almost looks just
38:49
Speaker 2: like an oudy belly button. I guess he would say,
38:53
Speaker 2: you can't even really notice. You would never notice in
38:55
Speaker 2: a million years, like that he has something weird with
38:59
Speaker 2: his I don't want to say weird special about his belly,
39:02
Speaker 2: but but that's the thing.
39:04
Speaker 3: I think when people talk about stove is they think,
39:07
Speaker 3: you know, this huge grape protruding things. But the ace
39:11
Speaker 3: is you know, again, if it's anything like mine, then
39:14
Speaker 3: it's very small. It's very discreet, you know, it doesn't
39:19
Speaker 3: you know, it doesn't create like a lumper under your
39:22
Speaker 3: T shirt or anything like that. You're not you're under
39:25
Speaker 3: sort of skin tight clothing or whatever. You're not going
39:28
Speaker 3: to be able to see it.
39:29
Speaker 2: Yeah, even with the Mickey button being there now, like
39:34
Speaker 2: you don't really notice it under his shirt or anything.
39:37
Speaker 2: But certainly when you don't have the device option do
39:42
Speaker 2: you can't tell anything. And I think eventually he'll probably
39:45
Speaker 2: go back to that, I'm sure as he gets maybe
39:47
Speaker 2: a little bit older and he really wants to be
39:49
Speaker 2: discreete about it, But right now he doesn't mind. I
39:52
Speaker 2: think it's great to have the option to do either
39:54
Speaker 2: one because some kids, you know, they may not like
39:58
Speaker 2: putting the catheter in, but even that like sounds like,
40:03
Speaker 2: I think more scary than it is. I think it
40:07
Speaker 2: was if it if when when it When it went
40:11
Speaker 2: in as it's supposed to, nice and easy, it was great.
40:15
Speaker 2: But it was just when we were having like a
40:17
Speaker 2: little bit of struggle like getting it in, that he
40:21
Speaker 2: just would get very upset. And of course the more
40:23
Speaker 2: upset he got, the more he would tense up, and
40:25
Speaker 2: then the harder it would be to get in. So
40:27
Speaker 2: if he can relax about it, I think when he's
40:29
Speaker 2: a little bit older and kind of do it himself,
40:30
Speaker 2: because I would tell him, like I can't feel your
40:33
Speaker 2: feel your body, so like you need to tell me,
40:35
Speaker 2: like is it going in the right way? Is it
40:38
Speaker 2: hurt it? You know? I think when he can do
40:40
Speaker 2: it on his own and kind of guide it in
40:42
Speaker 2: and he knows if it's going in in the right way,
40:45
Speaker 2: then that's gonna be a great option for him because
40:47
Speaker 2: it'll be very discreet. So I'm glad we we kind of.
40:53
Speaker 2: I'm glad. I'm very happy with our decision. You know.
40:58
Speaker 2: I think with anything, there's like positives and negatives. And
41:02
Speaker 2: I talked about this with the doctor the last time
41:04
Speaker 2: is that it is challenging. Like when we're on viks,
41:07
Speaker 2: especially with like a group like other family members, they
41:10
Speaker 2: kind of like don't understand stand that, like we need
41:13
Speaker 2: to take out this time to do that. They're kind
41:15
Speaker 2: of like, let's go, we need to go to dinner
41:17
Speaker 2: and we need to do this, and we're like, but
41:19
Speaker 2: we need to make time for Kellen's flush, you know,
41:22
Speaker 2: And you know, I feel like that's probably the biggest
41:26
Speaker 2: challenge with it. But if that's the biggest challenge that
41:30
Speaker 2: I think we're we're doing okay.
41:32
Speaker 3: Well that's what I was just start to just thinking
41:34
Speaker 3: that actually, if that's the biggest then then yeah, things
41:38
Speaker 3: suit to sound like to get all right, and when
41:40
Speaker 3: when you talk about the catheter and whatnot, we talk
41:43
Speaker 3: about like the bow washouts correct. Yeah, yeah, so kind
41:48
Speaker 3: of And is it still so again going back many
41:52
Speaker 3: many years to mine, is it still kind of you
41:57
Speaker 3: have the caster, you have the is it syringes is
41:59
Speaker 3: like full syringes.
42:03
Speaker 2: Now they use a gravity bag which is like basically
42:07
Speaker 2: the same bag for like tube feeding. So you put
42:10
Speaker 2: the fluid in the bag and then you just connect
42:14
Speaker 2: the tubing. There's a infit uh, kind of cap that
42:19
Speaker 2: then just goes connects either to the cafeter or it
42:23
Speaker 2: connects into the mini ace or the Mickey button, whatever
42:28
Speaker 2: device you have whatever G two, but you know you
42:31
Speaker 2: have so it just flows right from the bag. You
42:33
Speaker 2: just hang it up on your shower rod. That's what
42:36
Speaker 2: we do, hang it up on our shower rod with
42:40
Speaker 2: a hangar and and then it just flows right in.
42:43
Speaker 2: And so yeah, I do have a friend actually who
42:47
Speaker 2: they prefer to use a syringe. So you can use
42:50
Speaker 2: a syringe, but you know you're putting it like we
42:53
Speaker 2: use like four hundred mls. We actually use tap water.
42:57
Speaker 2: We don't use saline. The saline was two abrasive for him,
43:01
Speaker 2: was closing like a lot of cramping. So we just
43:03
Speaker 2: use tap water and glisserin. I think that's the biggest
43:06
Speaker 2: challenge in the beginning is figuring out the right recipe,
43:10
Speaker 2: and you might have to tweak the recipe along the way.
43:14
Speaker 2: So we've kind of have a great recipe for a
43:18
Speaker 2: while now. So we do four hundred mls of tap
43:22
Speaker 2: water and thirty mls of glycerine, and so I mean
43:28
Speaker 2: you're putting a decent amount of fluid, you know, in
43:32
Speaker 2: so to do it with a springe might take a
43:34
Speaker 2: little bit of time. The bag is great because you
43:36
Speaker 2: could just hang it up. It automatically goes in and
43:39
Speaker 2: you're good to go. So, as Kellen says, he always says,
43:43
Speaker 2: we have left off.
43:46
Speaker 3: Really, oh that's really it because I gain I I
43:50
Speaker 3: haven't I've see done one of these for many, many,
43:53
Speaker 3: many years. Yeah, to know that there are now different
43:56
Speaker 3: ways of doing the washouts and dish that, And I
44:00
Speaker 3: think that's great what you say when you find your
44:03
Speaker 3: own way of doing it and you go, actually, this
44:07
Speaker 3: doesn't work, and it's great that you have that option,
44:10
Speaker 3: rather than going, well, you have to do this even
44:12
Speaker 3: if it hurts you type thing.
44:13
Speaker 2: Yeah, right, right, Yeah, I think that was I mean,
44:18
Speaker 2: and that's what I would say that the toughest thing
44:19
Speaker 2: in the beginning is I think obviously in the very
44:22
Speaker 2: beginning it's new. Things are probably a little bit store
44:25
Speaker 2: to begin with, and then you know you are still
44:29
Speaker 2: doing right. You're still doing an enema right, even though
44:32
Speaker 2: it's from kind of the top down versus bottom up.
44:36
Speaker 2: It's gonna cause irritation, but you don't want it to
44:39
Speaker 2: be painful. And so I always say, like if you're experiencing,
44:44
Speaker 2: Like if your child is complaining of like cramping or pain,
44:48
Speaker 2: there really shouldn't be any of that. I think in
44:51
Speaker 2: the very beginning, just because things are so new, it
44:54
Speaker 2: might be a little bit more normal. But like now
44:56
Speaker 2: he does not experience any pain or cramping and everything
45:00
Speaker 2: works great. Very rare that we have an accident, so
45:06
Speaker 2: you know, it's it's very very effective for us. And
45:10
Speaker 2: and we tried the we've tried doing washouts previous to this,
45:16
Speaker 2: uh to see how that would work, and it was horrific.
45:21
Speaker 2: I will they can do one again.
45:24
Speaker 3: It's really really good to hear though that that he's
45:27
Speaker 3: getting on so well with them. And just while we've
45:30
Speaker 3: got sort of four or five minutes to the end,
45:34
Speaker 3: just I guess that. Then the last question is just
45:38
Speaker 3: in terms of the future. I know we've talked about
45:40
Speaker 3: the ACE and how well that's going in the moment.
45:42
Speaker 3: We've talked about eight surgeries. You said Kellen's Kellen's hash Hirschbrungs.
45:48
Speaker 3: What do you see future wise for for Kellen?
45:55
Speaker 2: I mean as far as Hirshwinings goes, you know, I
45:59
Speaker 2: think think we're going to continue with the ACE. I
46:03
Speaker 2: feel like that was a big surgery, and it took
46:07
Speaker 2: time to get adjusted to it. So I know, like
46:10
Speaker 2: my husband and I are, and and I think Kellen
46:13
Speaker 2: are in no rush to change that. I think we're
46:17
Speaker 2: gonna take things as they come as he gets older,
46:21
Speaker 2: if he decides, we're kind of letting him lead his journey.
46:25
Speaker 2: I think at this age, and when he comes to
46:28
Speaker 2: us and says, I don't want to do I don't
46:30
Speaker 2: want to have my ace anymore. I don't want to
46:32
Speaker 2: do washouts. I would rather do I'd rather have used medication,
46:39
Speaker 2: then I think we could start exploring. We'll start exploring that.
46:43
Speaker 2: You know, I'm I'm hopeful that as he does get older,
46:47
Speaker 2: you know, like teens start young adult, that hopefully he
46:52
Speaker 2: hopefully he won't need much support at all. But I don't.
46:57
Speaker 2: I don't hold the cards for that unfortually. So we're
47:00
Speaker 2: just going to take it as it comes. And and
47:03
Speaker 2: other than that, like he's just going to continue to
47:05
Speaker 2: be like a typical, you know, eight year old boy
47:09
Speaker 2: and playing in dirt and running around and going to
47:12
Speaker 2: school and doing all those things. So you know, I
47:16
Speaker 2: am grateful that, you know, I think the first year
47:20
Speaker 2: of his life was probably the first two years of
47:23
Speaker 2: his life was challenging, but I'm happy to see now
47:26
Speaker 2: that it's pretty much just a normal, a normal life,
47:30
Speaker 2: so normal, everyday life, brilliant.
47:34
Speaker 3: Thank you, well, thank you ever so much for coming
47:38
Speaker 3: on and sharing. Thanks for having me Welln's story because
47:41
Speaker 3: it's it's a Yeah, it's been fascinating. It's always great
47:45
Speaker 3: to meet somebody else who knows what an ace malone
47:47
Speaker 3: is or a mace as her that's all. It's always
47:52
Speaker 3: good to chat about that because I'm chatted about it
47:54
Speaker 3: for about twenty years.
47:55
Speaker 2: So yeah, I love it. I love talking about it
47:59
Speaker 2: because I think the more we talk about it, the
48:01
Speaker 2: better it is for arya right we meet, the spread
48:05
Speaker 2: the words.
48:06
Speaker 3: So absolutely absolutely so yes, thank you so so much
48:11
Speaker 3: for coming on, and I wish you and Kellen and
48:14
Speaker 3: or your family just the very very best of the future.
48:18
Speaker 2: Thank you so much. It was so great meeting you.
48:20
Speaker 1: Thanks for having me, Thank you for listening and being
48:25
Speaker 1: part of this growing community. If you have enjoyed the episode,
48:29
Speaker 1: don't forget to subscribe, leave a review, and share it
48:32
Speaker 1: with someone who might need it. You can connect with
48:34
Speaker 1: us on social media via Instagram, Facebook, and TikTok under
48:39
Speaker 1: the name Tom's Hirshprung's podcast. See you next Week
49:00
Speaker 2: By